Often ‘person centred care’ can be synonymous with profit generation in the private sector, hence a focus more on purses than persons as once quipped by Kate Swaffer, but it is a methodology whose roots warrant scrutiny. It gets away from the idea of patients as fodder for biochemical and neuroimaging investigations, with not much to be added by professionals. The meme that ‘there is no treatment for treatment’ plays very nicely into the medical model of dementia. However, taking a more social or psychological approach, you get a totally different perspective.
The complexity of dementia demands comprehensive individualised care that addresses physical, psychological, social, and legal issues of the persons with dementia as well as their caregivers Recently, person-centred care (PCC) has become valued in the field of dementia care. Nonetheless, PCC has been considered to be rather abstract or vague, partly as many publications are based on personal opinion, anecdotal evidence and/or theoretical constructs only.
Person-centred care is increasingly considered essential, whereas purpose-built facilities and environmental design are reported to enhance safety and to have a positive effect on behaviour. Within the UK National Health Service (NHS), the provision of person-centred services for individuals with acquired neurological conditions has been widely promoted. Services provided for people with dementia have been criticised in reports such as the UK Audit Commission’s ‘Forget-Me-Not’ which found them inflexible rather than person-centred, with poor integration of health and social services (Audit Commission, 2000).
To inform and direct service development for this clinical population, the National Service Framework for Long Term Neurological Conditions (Department of Health, 2005) originally set out quality requirements for improving PCC. PCC in rehabilitation has been defined as an approach that facilitates participation in decision making and goal-setting, client-centred education, client evaluation of outcomes, family involvement, emotional support, physical comfort, co-ordination and continuity.
Progressive deterioration in cognition, function, and behaviour make people with dementia increasingly dependent on others for normal activities of daily living. A person-centred approach is uniquely enmeshed with the pivotal importance of dignity. Dignity of identity represents a person’s subjective experiences of dignity and is related to integrity, autonomy, self-respect and social relations. This kind of dignity may be taken away or threatened by external events or by the acts of other people, for example, if an individual is humiliated or treated as an object.
Ideas about person-centred caregiving have been discussed by several authors within the gerontology literature. In the United Kingdom and elsewhere, Kitwood’s work with residents with dementia has been influential (Kitwood, 1997). This approach reconceptualises the dementias as involving processes not focused on pathology but on the social psychology of the person affected. An individual’s characteristics, including such things as the past, roles, personality, values, self-worth, spirituality, and so on, combined and defined through years of living, are often used to identify personhood at a higher level. Kitwood’s research places an emphasis on the belief that older adults should be treated as social beings worthy of relationship. Within each human being, regardless of cognitive impairments, is the desire to be respected and connected with others.
Dementia-care mapping (DCM) is a person-centred, multi-component intervention developed by the Dementia Research Group at Bradford University in the UK and is based on Kitwood’s social-psychological theory of personhood in dementia. DCM is a systematic approach for the assessment of PCC that can help to identify factors influencing behavior and to create individual person-centred care plans. DCM can also be used as an assessment for residents’ well-being.
As recent research investigations in nursing homes have emphasised, the personal relationships direct care workers forge with individual residents appear central to quality of care or quality of life outcomes on the part of residents. Evidence for improved outcomes for people with dementia through provision of person-centred care and dementia-care mapping thus far has been largely observational. However, taking a more robust scientific approach (it is mooted), person-centred care and dementia-care mapping both seem to reduce agitation in people with dementia in residential care.
Nursing staff’s person-centredness does play a modest role in relation to job characteristics and job-related well-being. Flexibility, possibly, is an essential ingredient of personcentered care. This person-centred care philosophy attempts to adapt care to the needs, preserved abilities, personality, habits, preferences, and cognitive, sensory, and physical limitations of the person with dementia. In order to do so, caregivers often have to adapt schedules, decision-making processes, and environments to the needs of the person with dementia, thus requiring a great degree of flexibility. It is currently felt that DCM is a “cost-neutral” intervention. It effectively reduces outpatient hospital appointments compared to usual care. Other considerations than costs, such as nursing homes’ preferences, may determine whether they adopt the DCM method.
The concept of person-centred care has recently been expanded to include “family-centred care” which acknowledges the important role of the family or other loved ones in the patient’s final days. Whereas experiences of having a relative with dementia in long-term care have been explored, the experience of spouses specifically is relatively sparse. As a contrast, staff on standard care wards often do not routinely complete personal profile documentation with family carers.
There has been – on the whole – a welcome recognition of the importance of a well-trained workforce to support people with dementia living in care homes. However, there is an emerging between the interventions that are routinely available and being commissioned, and the evidence base indicating benefit, arguably. In a way, person-centred care and family centred-care are not especially different what excellent caregivers, including professionals, should have been doing. Whilst nobody ‘owns’ the agenda, it would be a real shame if the marketing and corporatism o this ideology overplayed their hands at the expense of their clinical underpinnings.
Audit Commission. Forget Me Not: Mental Health Services for Older People. London: Audit Commission, 2000.
Department of Health (2012b). Compassion in practice: Nursing, midwifery and care staff. Our vision and strategy. London: Department of Health.
Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1, 13–22.